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07-06-2010, 10:49 AM | #51 | ||
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We ALL have alot to learn, matters not how many degrees we have. I certainly appreciate all the love and support that I have found here. When I am feeling argumentative it's been when I didn't feel listened to. When I was busy investigating the side effects of the dangerous but helpful medication, it's been when I have felt really afraid and worried about my future. I have expressed much anger at the medical community. As a nurse, no longer able to work, I did not have any idea how awful it feels to be completely at the mercy of someone who seems clinical and uncaring. God help me if I have acted that way. If I don't allow posters to be who they are and describe their experiences, no matter what they are, then when I feel crappy and negative and seem so contrary, then who will listen to me??? we are all in this TOGETHER! FG
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"Thanks for this!" says: | Conductor71 (07-06-2010), paula_w (07-06-2010) |
07-06-2010, 07:06 PM | #52 | |||
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07-06-2010, 08:53 PM | #53 | |||
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Going back to that previous post again Those silk PJ's sound good
Your no misfit Laura. Your smart sassy and articulate. That's a winner anywhere. Re quote below about "odd neuro". Your telling me. What a surreal world they live in. The MRI showed something that could be causing some PD like thingees but he thinks not. Is he psychic ? Anyway that what got me here to this forum to explore the murky world of diagnosis esp after reading about the 2600 odd misdiagnosis annually in the UK. G girl Im afraid I disagree with you re toxicity of L Dopa. But lets be friends why we bicker and await the jury The MRI is standard protocol As Im Sure You Know (AISYK) to rule out the other nasties. I suspect Neuros the world over back themselves on diagnosis and clump in little friendly groups where they all know each other. Whats a few wrong diagnosis amoung friends So Im here to chat, meet people online, more chat, ignore button a person or two ( U know who U R) and generally expand my meagre knowledge in a seeking playful para sympathetic nervous system dopamine enhancing way Jak Quote:
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07-06-2010, 11:01 PM | #54 | |||
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Ive heard many Nurses say that too. As pts they felt so powerless and Nurses can be very clinical at times due to the workload. I always try to have a laugh with pts. The medical profession and mistakes !!!!Yesterday I met a lovely couple. He had his entire large intestine out twenty yrs ago and has had pain ever since. Bad pain. When it was removed the problem area was the size of a small coin!!!!!!
Jak Quote:
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They call you heartless: but your heart is true, and I love the bashfulness of your goodwill. Ye are ashamed of your flow, and others are ashamed of their ebb. Ye are ugly? Well then, my brethren, take the sublime about you, the mantle of the ugly! - Thus spake Zarathustra. . |
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07-07-2010, 10:44 AM | #55 | |||
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re: use of MRI in PD diagnosis - it is standard practice to use one in the US during the process of a PD dx, but it is to rule things out because nothing else shows up ("your brain looks healthy; must be PD"). I believe that your (Jak) experience with your doctor seeing something that meant PD is what is interesting; I don't think I have heard of an identifying marker before.
re: the long time use of carbodopa/levodopa - this is a sensitive topic, I think, because it is something that each crop of newbies has more information to work with - both from talking to other patients and from what our docs are learning. We all are lab rats when it comes to taking PD drugs over a period of several years; it seems like we are collectively coming to the conclusion that less is better - that is IF you can accommodate your life to make that work. It's all a big trade off - some need maximum symptom control in order to keep a job for a few more years - but does that mean shortening their effectiveness? Can people with tremor last longer on a smaller dose? How fast would we progress without any meds at all? Is any of what we are taking toxic? Now? After a few years? In two months? Who knows? Nobody knows. Nobody. The sensitivity arises from the question, "What if I knew then what I know now ........." If only I had waited to start Sinemet, I wouldn't be so dyskinetic now ........ if only I had started Sinemet earlier to squeeze a few more good years out .... if only .... if only. That's the value of this kind of forum ..... it leads to some kind of collective wisdom that even our doctors don't understand - but they would have a better understanding if they bothered to seek the wisdom - then act on it. That's the goal of activism; that's why we keep posting.
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Carey “Cautious, careful people, always casting about to preserve their reputation and social standing, never can bring about a reform. Those who are really in earnest must be willing to be anything or nothing in the world’s estimation, and publicly and privately, in season and out, avow their sympathy with despised and persecuted ideas and their advocates, and bear the consequences.” — Susan B. Anthony |
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07-07-2010, 08:33 PM | #56 | |||
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Junior Member
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Yes precisely. The value of activism.
I have an article showing most Neuros are 10 to 15 years years behind research and misdiagnosis rates may be as high as 30%. My baseline includes the above plus 1/ I dont trust Big pharm 2/ I dont like the way health is run, its too corrupt and infected with self interest, worldwide 3/ PD diagnostics are flawed and Medicine has NOT got any real idea at all about what causes PD so all bets are off. As you say " Nobody knows. Nobody. " . I would qualify that but not here ..which brings up.... 4/ I believe in Light and truth and see the world as lacking in it right now and not accept otherwise and will resist those who are negative ....but also I understand 5/ PD treatment has, as you pointed out, made Lab Rats out of millions? I am sensitive to this and feel sorry for so much suffering while money pours into wars like Iraq and weapons and rich ** pockets Bring on the activism jak Quote:
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They call you heartless: but your heart is true, and I love the bashfulness of your goodwill. Ye are ashamed of your flow, and others are ashamed of their ebb. Ye are ugly? Well then, my brethren, take the sublime about you, the mantle of the ugly! - Thus spake Zarathustra. . |
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07-07-2010, 09:37 PM | #57 | ||
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Jak,
If you're given a definite diagnosis this is an excellent site to belong to. However I get the feeling you might just be trying to take the **** out of the PD community here now. Perhaps tone it down a bit as it could well be that you're jumping the gun and it turns out to be a bit premature or even unnecessary if say it is an infarct etc. |
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07-07-2010, 10:17 PM | #58 | |||
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Junior Member
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I have a definite diagnosis its just that I think its wrong. Tone it down? This life we have isnt a practice run. This is it. If people want to tone it down or are happy to let some Neuro dictate their life that thats a choice they are making. So of us dont do victim or dont let others take control
Im just starting up. I have had a lot of support for the idea that Neuros are very fallible or just plain negligent from this site backchannel. As I have said before Im in health care and negligence and ineptness are part of the system. People outside dont often appreciate this. You have no idea how often a good nurse has put a bad doctoring choice back in the silly box it came from thru advocacy and downright assertiveness backed by the nurses understanding of law and negligence. Advocacy is an RNs duty by law in this nation and if this site is representative of health care a lot of people here will have suffered the affects of negligence and ineptness Jak Quote:
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They call you heartless: but your heart is true, and I love the bashfulness of your goodwill. Ye are ashamed of your flow, and others are ashamed of their ebb. Ye are ugly? Well then, my brethren, take the sublime about you, the mantle of the ugly! - Thus spake Zarathustra. . |
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07-07-2010, 10:24 PM | #59 | |||
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Junior Member
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Quote:
We each have our own body with exposure to different foods in our diets, environment rich with toxic substances in the air we breath, water we drink and things our skin touches constantly or daily. Who can "judge" what another person does UNLESS you have walked in their body long enough to have a reasonable opinion to base that opinion upon??? Your "mixture" sounds interesting. Similar to the things I have been trying. |
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07-07-2010, 11:27 PM | #60 | |||
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Junior Member
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I may or may not have Parkinson's, no test is available to tell me or anyone here that we really 100% for sure know that is the correct DIAGNOSIS???
Hello people.......a doctor may at times act like a "god", walk and talk "god-like", yet they are not. Yes, I feel for all people here, young and old being told they have this because I was told that several months ago and am trying to come to grips with all that I have seen and heard from many different opinions and sources. The TRUTH sometimes hurts, yet the truth will STAND when all else falls into the recesses of time. I want to find out if there is SOMETHING BETTER than the Sinemet or other meds prescribed for this condition. I am not telling any older patients who know beyond a reasonable doubt they have this disease they were wrong for taking the medications their doctor gave them. Are we not all at least still "INDIVIDUALS" at the end of the day and able to make choices of what we take or not??? I pray to GOD that I am not guilty of making a false judgement against another person whether they have Parkinson's or not. I just want to be given the chance to voice my opinion here and offer AN OPINION; take it or leave it. Nothing more or nothing less. I see that some here are at odds with differing opinions. It is still a free country at the moment, so choose where YOU stand. I only wish that we could all learn from our telling our thoughts without getting to take it all like we are fighting each other. PARKINSON'S is enough for any of us to try and deal with without all the childish crap. Can we be CIVIL here? That is my humble opinion on what I have read in this THREAD so for. Hope this will pass inspection. I would like to enter this ARENA if we can all try to learn from different opinions and end being hostile. I don't need STRESS and neither do any of us who have this; stress if the worst thing we can get. just_me_77 |
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